Women who suffer from the chronic-pain condition vulvodynia often feel
isolated from their partners. But a better medical understanding is helping.
In her 18 years as a sex therapist in Orange County, California,
Stephanie Buehler has come to recognize a certain tense, fraught dynamic in couples when
a female partner has vulvodynia. The chronic-pain condition affects female
genitalia, sometimes manifesting itself in generalized pain throughout
the vulva and sometimes in localized pain that can be provoked through
vaginal penetration. Either way, vulvodynia can make sex extremely painful.
Often, “these couples have stopped having any kind of physical contact.
Usually they’ve stopped being affectionate,” Buehler told
me. Particularly in mixed-sex couples, she’s found that “sometimes
it’s because the woman is afraid that if there’s any physical
contact, he’s going to get aroused and she’s going to have
to say, ‘I’m not interested.’ Or it’s because
he doesn’t want to burden her with his needs.” Not every couple
whose love life has been affected by vulvodynia fits that description,
Buehler noted: “Sex is not the be-all, end-all for every couple.”
But many, she’s found, are frustrated by the loss of a way to communicate
their love to each other. Sometimes a partner, especially a male partner,
feels rejected, believing the female partner is exaggerating the pain
she feels during sex as a way to brush him off. Sometimes the female partner
feels guilt or frustration because she feels she isn’t able to fulfill
her role in the sexual partnership. Some couples feel mutually resentful
of their partner’s apparent failure to meet or understand their needs.
For more than a century, pain during penetrative sex was murkily understood
and often presumed to be a physical manifestation of women’s dislike
of or anxiety toward sex. Today, as Buehler puts it, it’s less common
for people to have to visit 10 different doctors to finally get a diagnosis,
but it’s still likely they’d have to see three. The Mayo Clinic explicitly states that doctors still don’t know what
causes the condition, and the American College of Obstetricians and Gynecologists
calls it a “diagnosis of exclusion.”
Still, researchers and physicians have made significant strides in understanding
and effectively treating what’s now recognized as a real and common
physical condition. In the process, they’ve helped many couples
find hope in a situation that not so long ago felt hopeless.
Vulvodynia can affect more than just a person’s sex life (using tampons,
getting pelvic exams, riding bicycles, and even wearing tight-fitting
pants can cause pain), and anychronic condition can take its toll on a
marriage or relationship. But not many chronic-pain conditions affect
relationships in quite as direct and obvious a way as vulvodynia does.
When Buehler meets one of these couples, she first works with them on integrating
someforms of affection back into their lives—kissing hello and goodbye
at the start and end of the workday, sitting together on the couch, holding
hands as they walk to their car. She works with them on how to talk about
their feelings toward sex, separating their feelings about sex from their
feelings about each other, and she works with them on how to engage sexually
in ways that don’t involve penetration. Buehler also puts women
in touch with pelvic-floor physical therapists or physicians who can treat
the parts of the vulva that experience burning or stabbing sensations
through massage, biofeedback therapy, injection of Botox, or surgery.
(Frequently, she said, a male partner’s suspicion that his wife
or girlfriend is exaggerating her pain level dissolves once he’s
observed a physical-therapy session or two.)
After
physical therapy, counseling, treatment, or some combination thereof, Buehler said many
of the couples she works with are able to enjoy pain-free sex; all at
the very least learn new strategies for how to manage the pain and/or
maintain intimacy. Many couples leave “feeling like,
Wow, we got through something together, and we’ve grown closer because of it,” Buehler said.
Female pain during sex has a long history of being misclassified, misunderstood,
and blamed on the women themselves. As Maya Dusenbery writes in
Doing Harm, a book about sexism in medicine, vulvar pain was first described in medical
texts in the late 19th and early 20th centuries as a sort of recurring
but mysterious phenomenon, a pain with no known cause.
Throughout much of the 20th century, however, the burning or stabbing sensation
many women reported was considered “more of a marital problem than
a medical one,” as Dusenbery puts it. Vulvar pain, which often shows
up in tandem with vaginismus (a condition involving spasms of the pelvic-floor
muscles that can make it painful or impossible to have intercourse), was
frequently believed to be a physical manifestation of unhappiness in a
relationship, and thus methods for treatment included things like hypnosis,
couples therapy, and numbing ointments—the last of which often made
sex possible, though not necessarily enjoyable.
But even in the 1970s and 1980s, after feminist activism had more firmly
embedded female sexual pleasure into the conversation about sexual health,
vulvar pain—now beginning to be called vulvodynia—was still
widely considered to be linked to psychiatric or psychological problems.
“Inexplicable pain in a woman’s genital area that often interfered
with sex? The symbolism proved too tempting to resist, and pseudo-Freudian
theories ran rampant,” Dusenbery writes. As a result, many women
who suffered from pain provoked by sex and other genital touching were
told that they were simply frigid or uptight, or that they just needed to relax.
Read: The doctor doesn’t listen to her. But the media is starting to.
It wasn’t until the 2000s that researchers came to recognize vulvodynia
as a chronic-pain condition rather than a sexual dysfunction—and
that was largely thanks to the efforts of a group of women living with
vulvodynia who lobbied for more research funding. Phyllis Mate co-founded
the National Vulvodynia Association in 1994, and today she serves as the
president of its board. Within a few years of the NVA’s founding,
she told me, the organization had successfully lobbied the National Institutes
of Health to hold a conference on vulvodynia. “That did a lot to
legitimize the disorder,” she said. “If you were a doctor,
it was like,
If the NIH is interested in it, it must be real.” In the years since, and especially in the 2010s, she added, public awareness
and medical understanding of vulvodynia have improved significantly.
The new attention to vulvodynia also revealed just how common the condition
is. Research conducted in the mid-2010s suggested that some 8 percent
of women were currently experiencing vulvodynia symptoms; a 2012 study
found that an additional 17 percent of women reported having symptoms
in the past. One 2007 study found that a quarter of women with chronic
vulvar pain reported an “adverse effect on their lifestyle,”
while 45 percent reported adverse effects on their sex lives.
Of course, heightened awareness doesn’t mean universal awareness.
A 2014 study found that more than half of women who reported experiencing
chronic vulvodynia symptoms had sought care, but received no diagnosis.
As Dusenbery points out in
Doing Harm, research conducted in the mid-2000s found that one-third of women with
vulvodynia considered the most unhelpful care they had received to be
from doctors who had explained that their physical pain was “psychological”
or “all in their head.”
When Haylie Swenson, a 33-year-old writer and educator who wrote earlier
this year for the blog
Cup of Jo about her experience with vulvodynia, got married 10 years ago, she had
never had penetrative intercourse, but because she’d experienced
vulvar pain in other situations, she worried she’d never be able
to have sex without pain. Swenson’s fears were confirmed on her
honeymoon in Paris, and upon returning home, she started calling doctors.
The first, she recalled, told her to “use lube, make sure you’re
warmed up, and have a glass of wine.” Which was terrible advice,
Swenson added, and not just because Swenson was a Mormon at the time and
didn’t drink. The problem wasn’t the amount of lube or foreplay,
she insisted; the doctor wasn’t listening. “I felt gaslit,”
she told me.
Eventually, Swenson managed to get a diagnosis, but the next two years—the
first two years of her marriage—were punctuated by doctors offering
new treatments and those treatments failing to solve the problem, and
by Swenson’s hopes rising and crashing accordingly.
In July 2018, Allison Behringer told the story of her own experience with
vulvodynia on the first episode of
Bodies, the documentary podcast on medical mysteries that she hosts. In the episode,
titled “Sex Hurts,” Behringer tells a story that begins when
she was 24: She met a man, fell in love, and enjoyed a loving, rewarding
sex life with him until one day, on vacation (also in Paris), she experienced
a mysterious sharp pain during sex. The relationship intensified, but
so did the pain, and as Behringer searched for a remedy, her partner became
more and more frustrated by her inability to have penetrative sex with him.
In the end, with treatment and physical therapy, Behringer’s pain
subsided. But soon afterward, the relationship dissolved. Behringer and
her ex had started to fight about a lot of things, even after the sex
got better. But “in the inevitable post-relationship ‘what
went wrong’ analysis that we all torture ourselves with,”
she said in the episode, “I’ve wondered
somany times how things would have turned out if it weren’t for the
pain.”
In the year and a half since “Sex Hurts” was released, Behringer
said she has been contacted by “somewhere between 50 and 100”
women—via email, Facebook message, and LinkedIn—who got in
touch to tell her their own strikingly similar stories. Not only do their
long, discouraging searches for care sound a lot like Behringer’s,
but so do their stories of relationships that suffered or crumbled entirely
as a result. “A lot of people are like, ‘My partner was really
unsupportive. My partner sounds like he was just like your partner,’”
she told me in an interview.
Despite the strides researchers have made in recent years toward understanding
vulvodynia, living with it can still be a profoundly isolating experience.
It can be like having all the frustrating everyday complications of any
other chronic condition
plus the added hardship of being shut off from one important and primal way
to feel close to a partner. (Of course, other kinds of sexual expression
are in many cases still possible, but penetration is often considered
an important or primary objective of heterosexual sex.)
Recent research has found, however, that how partners respond can greatly
affect the relationship quality of couples affected by vulvodynia. For
instance, researchers have found that “facilitative” behaviors
from male partners (things like showing affection and encouraging other
kinds of sexual behaviors) lead to better sexual and relationship satisfaction
than “solicitous” behaviors (like suggesting a halt to all
sexual activity) or angry behaviors. Many studies have linked localized
(or “provoked”) vulvodynia to decreased sexual satisfaction,
but not necessarily to decreased relationship quality, and other research
has suggested that even the intensity of the pain women report can be
affected by partner responses.
Swenson, who describes herself in her blog post as “the higher-desire
spouse” in her marriage, said she and her husband found other ways
to enjoy sexual pleasure that didn’t involve penetration. “I
think it’s sort of damaging, the way that people hold up penile
intercourse as, like, the be-all, end-all,” she told me. Still,
the limitation of their sex life, she said—the knowledge that “we
didn’t have this
one thing”—was frustrating. “It made me feel sad,”
she said, “and it sucks when sex makes you sad.”
While Swenson’s husband shared her sadness and frustration, she remembers
feeling alone in her search for a remedy: “It was my body, my vagina,
that I had to take to all these strangers,” she said. “It was
my story that I had to tell over and over. It wasmy struggle to be believed and be taken seriously.”
Swenson eventually underwent surgery for her vulvodynia. (In cases like
Swenson’s, where other treatments have failed, doctors often recommend
removing the painful tissue.) After a two-month recovery and an all-clear
from her doctor, she and her husband had penetrative sex for the first
time. It didn’t hurt, Swenson told me, and afterward, she cried.
“When intercourse got easier, everything got a little easier,”
she said. Still, “it took a long time to untangle those knots,”
she added. “It was just this fraught, tangled thing, representing
so many emotions. Anger, and regret, and this sort of feminist rage I
had toward the medical-industrial complex that didn’t care—all
of that got tangled up in my sex life.”
Perhaps the most important aspect of vulvodynia that the flurry of recent
research has revealed is its prevalence: It’s newly apparent that
thousands of women, along with their partners, have quietly faced agonizing
challenges like Swenson’s and Behringer’s. But while the outlook
for these couples a generation ago would likely have been bleak, today
help, and hope, are possible.
To view the original article, please visit
The Atlantic.